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National Youth Leadership Institute


What is NYLI

The National Youth Leadership Institute (NYLI) at the National Hemophilia Foundation (NHF) exists to provide youth (18-24 years old) in the bleeding disorders community with leadership opportunities to encourage personal growth, effect change, and positively influence others.

What to Expect

The National Youth Leadership Institute is a three-year program designed to assist young people from the bleeding disorders community to become well-trained, recognized leaders. In addition, NYLI provides an amazing opportunity for youth to learn and share experiences of living with a bleeding disorder. NHF achieves these outcomes by providing young adults with training, support, and opportunities to provide education to the bleeding disorders community.

As of January 2015, the NYLI program has implemented a three-year curriculum. The program will continue to provide youth with the same opportunities to become established leaders and speakers in the bleeding disorders community, while also providing them with the tools to implement more direct programs at the local level.

Each year of the program will focus on developing specific skills through a variety of in-person trainings, webinars, and year-round communication. The 1st year of the program is dedicated to developing individual and professional skills including: public speaking, leadership techniques, networking skills, and résumé building. In the 2nd year of the program, NYLI will further develop these skills by selecting one of three areas of focus – or “tracks” – that will shape the remainder of their time in NYLI:

Outreach Track: Training and experience in delivering in-person educational programming to NHF chapters and HTCs around the country. NYLI members in 2016 facilitated Steps for Living workshops (“Do You Bleed Like Me?”, “Playing it Safe: For Kids”, and “Becoming Independent On My Own”) and the Artistically Speaking art workshop.

Advocacy Track: Training and experience in speaking with elected legislators, facilitating advocacy education workshops, involvement in legislative events for state chapters in a leadership capacity with a special interest in training youth to become more confident advocates.

Non-Profit Development Track: Training and hands-on involvement in experiencing what it takes to run a non-profit organization by serving local NHF chapters in a leadership capacity (e.g. serving on a board, developing a fundraising or awareness campaign, managing a chapter program).

In their 3rd and final year of the program, NYLI members will primarily be out on the ground, delivering in-person workshops and programs for NHF chapters and HTCs at the local level.

Applications will be available in early September, with a deadline of October 31st, 2016. Applicants will be notified of their acceptance by mid-November. Youth may remain in the program for three years total, but they are requested to renew their membership annually by completing a renewal form.

What You Get

  • Training and experience in developing leadership and communication skills
  • Opportunities to experience and network with the bleeding disorders community at a national level by attending national meetings and providing educational workshops in several states
  • Experience in creating and facilitating meaningful programs  for the purpose of education, advocacy, fundraising, and awareness

Each year, all NYLI members attend the NHF Annual Meeting, which includes educational training components, volunteering to engage the greater bleeding disorders community, and speaking opportunities. In addition to the trainings below, NYLI may also be invited to attend additional trainings and meetings throughout the year.

**All expenses (e.g. travel, hotel, meals) for any NYLI event are covered and/or reimbursed by NHF.

What you Give

If selected, the following responsibilities will be expected of you.

  • Represent NHF in a positive manner
  • Help NHF to understand issues particular to young adults
  • Respond to NHF communications within 2 business days

You will be expected to participate in the events and trainings listed below.** 

1st Year:

  • Leadership Training (New York, NY – January 4-7, 2017)
  • Tour of Grifol’s factory (Los Angeles, CA – May, 2017)
  • NHF Annual Meeting (Chicago, IL – August 24-26, 2017)

Choosing of Tracks

2nd Year:

  • Washington Days Training
  • NHF Regional Leadership Seminar or Outreach Training
  • NHF Annual Meeting
  • Travel 2-3 times to deliver education programming at state chapter events (Outreach and Advocacy Tracks)

3rd Year:

  • Washington Days Training
  • NHF Annual Meeting 
  • Travel 2-3 times to deliver education programming at state chapter events (Outreach and Advocacy Tracks)

**NYLI places school and work as a first priority, however consistent inability to meet these expectations may result in termination from the program.

For More Information Contact:

Marlee Whetten, Education Specialist

Phone: 212.328.3735